Winter 2015 MEMORY MATTERS | 1

Autumn/Winter 2018 ISSUE#128

Dementia AustraliaQUARTERLY MAGAZINE

Demystifying dementia New Magpies AmbassadorSurprise performance by Normie Rowe

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Dementia Australia in Victoria

Learning Services 155 Oak Street, Parkville Vic 3052

Family Services 98-104 Riversdale Road, Hawthorn Vic 3122

Regional Offices Four regional hubs are based in Ballarat, Bendigo, Drouin and Geelong supporting our state-wide services. Online Dementia Support is available after hours at helpwithdementia.org.au

ABN 14 671 840 186

Postal Address Locked Bag 3001, Hawthorn 3122

Tel 03 9815 7800 Fax 03 9815 7801

About us Dementia Australia is the national peak body for people, of all ages, living with all forms of dementia, their families and carers. Dementia Australia provides advocacy, support services, education and information. An estimated 425,000 people have dementia in Australia.

Dementia Australia BoardChair: Prof Graeme Samuel AC Vice-Chair: Tony Newman William Bass Jenna Dennison Greg Fraser Amanda Quealy Paul Robertson AO Neil Samuel Maree McCabe, CEO Dementia Australia

Chief Medical Advisors Assoc Prof Michael Woodward AM (Vic) Scientia Prof Henry Brodaty AO (NSW)

Patron (Victoria) The Honourable Linda Dessau AC, Governor of Victoria

Ambassadors VIC Division Lyn Allison David Astle Ben Crocker Terence Donovan Colleen Hartland MP Takaya Honda Amy Jackson Emma Kealy MP Sam Mitchell Fiona Patten MP Anne Phelan AM Prof Graeme Samuel AC Mark Seymour Nicola Stevens Denis Walter OAM Gabrielle Williams MP Assoc Prof Michael Woodward AM

DisclaimerArticles in this publication provide a general summary only of the subject matter covered. Any person with dementia should seek professional advice about their specific case. Dementia Australia is not liable for any error or omission in this publication. Permission should be sought from the Editor before reproducing articles or images. Once permission is given the source must be acknowledged. Dementia Australia does not endorse any products, opinions or services of any description.

WELCOMEfrom our Chair

Cover Jim and Tara Macdonald share their experience on page 4 Photo: Michelle Grace Hunder

In October last year it was with great pleasure that we officially launched Dementia Australia as the new voice of Alzheimer’s Australia for the 425,000 Australians of all ages, living with all forms of dementia, their families and carers.

In the eight months since then our transition to a unified, national peak body is proving to be timely and valuable as the benefits of shared resources, knowledge and expertise make a positive impact across all our services, including education, counselling and support.

While we still have some way to go it is encouraging and rewarding to see how far we have come. As a bigger,

stronger, bolder Dementia Australia we continue to take shape. We continue to gain confidence and capacity to not only keep the subject of dementia front-of-mind in the political and public interest, but to seek and capitalise on opportunities to ensure the needs of every Australian living with dementia and their family is heard, respected and prioritised.

This has been evidenced through continued media coverage that has constantly kept dementia in the news and in conversations around Australian dinner tables. More recently our recommendations to the Federal Government’s Carnell-Paterson review for a simpler and more accessible safety and quality regime for aged care has resulted in the creation of the Aged Care Quality and Safety Commission that will provide a single point of contact for dealing with claims of sub-standard care.

This merging of the Australian Aged Care Quality Agency, Aged Care Complaints Commissioner and the aged care regulatory functions of the Department of Health into a single entity will benefit people living with dementia, their families and carers.

This Commission is one of many measures Dementia Australia has called for and we are pleased to see it included in the Federal Government’s 2018 budget, as part of its $5 billion dollar commitment to the aged care sector. And, while we welcome this investment to help ensure better access, better quality and overall better ageing for all Australians – we would also like to see the government recognise dementia as the significant health and social challenge that it is, as well as a core business with more than 50 per cent of residents in aged care having a diagnosis of dementia and many more remaining undiagnosed.

In addition to advocacy we continue in our role to inform people about Dementia Australia’s many services that enable people living with dementia to stay at home longer and for thousands of Australians to better understand and manage the diagnosis, its progression and to live well with dementia.

I would like to acknowledge the incredible dedication of our teams of staff and volunteers, and the contributions of our consumers around Australia.

I look forward to a future full of promise for Dementia Australia, and most importantly, for the people we are here to serve.

Prof Graeme Samuel AC Chair Dementia Australia

Autumn/Winter 2018 Memory Matters | 3

Welcome to the latest edition of Memory Matters.

This edition I would like to discuss the very important topic of raising awareness and reducing stigma around dementia. But, what does this really mean and why is it so important?

Raising awareness and reducing stigma is about supporting members of the general community to become dementia aware by being able to identify the signs of dementia, knowing how to communicate effectively and developing compassion and empathy for the challenges many people impacted by dementia experience.

People living with dementia must be supported to live the life they choose and to be treated with respect. A nation-wide survey conducted by Dementia Australia last year showed that despite growing awareness

about the condition, people living with dementia still report sometimes feeling incompetent, lonely and isolated. And while members of the community may be empathetic towards people living with dementia, there is a growing demand for education from the community.

Helping to lead this charge with Dementia Australia is one of the founding members of the Dementia Australia Advisory Committee, John Hiller. John is one of our extraordinary Dementia Advocates who generously contribute to our work to increase understanding of how to better support people impacted by dementia. I encourage you to read John’s inspiring story on page 7.

I’d also like to draw your attention to two campaigns Dementia Australia was pleased to launch in March – our “Dementia Friends” campaign to promote community awareness and understanding. And, our “Turn to Us” campaign to remind everyone impacted by dementia that Dementia Australia provides many fantastic services to assist people live well with dementia, support is available and you do not have to face this alone.

Before I sign-off, I would like to acknowledge the Federal Government’s $5 billion dollar commitment to the aged care sector in its 2018 budget. We very much welcome this investment and the difference it will make to the lives of older Australians. We would also like to see a greater focus on dementia and with it the funding to address the condition now and into the future.

As we all know, dementia impacts everyone and we can all play a part to support people living with dementia to have the opportunity to remain engaged with their community and lead the life that is important to them. Together, we can make a difference.

Maree McCabe CEO Dementia Australia

WELCOMEfrom our CEO

ISSUE#128This issue is online at

dementia.org.au

Left Maree McCabe with Memory Walk & Jog participants in Templestowe

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NEWS FEATURE

Although more than 425,000 people are living with dementia in Australia and the figure is expected to increase to over a million by 2056, dementia is still a highly misunderstood condition. The lack of community awareness and misinformation can contribute to social stigma which can have a devastating impact on the lives of people with dementia, leading to discrimination, social isolation, which may even affect a person’s willingness to seek help or a diagnosis.

Jim is living with Alzheimer’s disease. When his father was diagnosed with dementia 20 years ago, people knew very little about it. “If you don’t understand something, you walk away from it,” he says.

The Dementia and the Impact of Stigma survey undertaken by Dementia Australia last year revealed many people within the community are still unfamiliar with dementia.

The national survey found that although there is some understanding of dementia in the general community, it is alarmingly low. More than half the survey respondents did not know the relationship between Alzheimer’s disease and dementia; and more than 80 percent did not know that dementia is the second leading cause of death in Australia. This is despite the fact that one-third of respondents reported someone close to them had a diagnosis of the condition.

Dr Kaele Stokes, Dementia Australia’s Executive Director Consumer Engagement, Policy and Research said there is evidence that suggests the stigma around dementia continues due to a lack of awareness about the disease.

“What is very clear is that there are members of the community that are still unfamiliar and uncertain about dementia,” she said.

“Many people don’t understand that dementia is a disease of the brain and that it is not a natural part of ageing.”

This lack of understanding is reflected in the way people feel about those living with dementia. According to the survey, 39 per cent of people said they felt awkward around someone with dementia.

Jim’s wife and carer, Jan, mentioned that since her husband was diagnosed socialising has become more challenging.

“When people do speak with him, sometimes they talk down to Jim as if he is a child.”

Demystifying dementia

The way we respond as a community can leave people living with dementia and their carers feeling embarrassed and uncomfortable in social situations. In fact, 94 per cent of respondents who have a diagnosis and 60 per cent of carers said they encountered embarrassing situations as a result of dementia.

Maree McCabe, Dementia Australia CEO said we all play an important role in helping to reduce social prejudice.

“As a community, we must be inclusive, respectful, kind and understanding to enable people with dementia to live well as valued members of society.”

Dementia Australia is working to reduce stigma in the community through groundbreaking virtual reality technologies, online resources, major initiatives such as Dementia Friendly Communities and countless community services.

Jim’s daughter, Tara, confirmed there is a growing awareness developing within the community.

“Work was really supportive when I told them about Dad’s diagnosis. They were understanding and let me take time off no questions asked,” she said.

“A family counselling session helped get us all on the same page and to reduce the stigma of dementia within our close group."

Dementia Australia is here to provide support for people, of all ages, living with all forms of dementia, through vital services such as the National Dementia Helpline and counselling.

You can help break down social stigma by starting a conversation and letting the person living with dementia or their carer know that they are not alone.

Find out more information on Dementia Australia at dementia.org.au. Sign up to become a Dementia Friend at dementiafriendly.org.au

Above Jim and his daughter Tara talking to the media at the April Memory Walk & Jog in Templestowe. Photo: Ari Hatzis

Autumn/Winter 2018 Memory Matters | 5

NEWS IN BRIEF

Above The group who presented at Parliamentary Friends of Dementia in June 2017, A Good Death is Our Right, Consumers Alice Wong; Ken May; Sharon Bourne; Rob Trinca, and Jane Sandow; Leanne Wenig, the then Acting CEO Alzheimer's Australia Vic; Emma Kealy MP, Co-convenor Parliamentary Friends of Dementia; consumer Deb Barker; Gabrielle Williams MP, Co-convenor Parliamentary Friends of Dementia; consumers Terry Barnett; Anne Tudor, Edie Mayhew and Melvyn the younger onset dementia assistance dog. Photo: Arsineh Houspian

Bringing dementia to Parliament The Parliamentary Friends of Dementia program is designed to elevate the voice and experience of people living with dementia, families and carers to the level of government through a series of events at state parliament houses.

Co-convened with Members of Parliament and focusing on specific issues of relevance to people impacted by dementia, the Parliamentary Friends of Dementia program raises awareness of dementia among MPs and the communities they serve. The program also gives people living with dementia the opportunity to tell their stories and share their experience with decision makers.

Parliamentary Friends of Dementia events are typically arranged around a specific policy or consumer issue that has relevance and meaning to people living in the community, for example, access to services for people with Younger Onset Dementia. Dementia Australia engages with Members of Parliament from all sides of politics and the events are consciously bipartisan in their approach.

The program gives people living with dementia the opportunity to share their experience with decision makers.

Parliamentary Friends of Dementia are not only helping to reduce the stigma of dementia from within the community, but they provide Members of Parliament with an insight into the issues that impact their electorates. Dementia Australia is currently developing a national strategy to ensure we have Parliamentary Friends all over Australia.

Social Media + Dementia Australia = #WinningDementia Australia has a highly engaged online community across its Facebook, Twitter, Instagram and LinkedIn social media platforms.

Social media has proven an increasingly effective way of promoting our key messages and educating the community with our awareness campaigns. With almost 45,000 followers on Facebook and 11,000 on Twitter, social media allows us to bring dementia out of the closet and have important conversations in really interesting and innovative ways. It’s also a great way to connect with a new and younger audience.

Our social media presence hinges on interesting and purposeful content, tailored to our audience’s needs. With this in mind, content shared across our social platforms is centered on one key objective – supporting, educating and raising awareness to help destigmatise dementia.

Do you follow us? Visit Dementia Australia on each of our social media platforms.

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National Dementia Helpline answers the call to lend support Each week the National Dementia Helpline receives hundreds of calls from people around the country seeking support and information on accessing services and resources or to simply have a chat about memory loss and dementia.

The Helpline is staffed by skilled and passionate advisors, who provide a sense of comfort, supporting callers and directing them to information and valuable services; helping people to unravel the knots surrounding dementia and unpack some of the challenges they face.

We speak with sons, daughters, husbands, wives, in-laws, siblings, friends, carers and health workers alike. We speak to people who have been diagnosed with dementia, people caring for someone with dementia, or people just wanting to find out more about dementia or how to reduce their risks. All contacts to the National Dementia Helpline are free and confidential. Turn to us for dementia support or information.

The National Dementia Helpline can be called on 1800 100 500 9am to 5pm, Monday to Friday. Or email anytime at helpline.nat@dementia.org.au or webchat at dementia.org.au/helpline/webchat

Are you a Dementia Friend? Dementia Australia is working to change attitudes towards dementia and encourage communities in which people living with dementia, their families and carers are supported to live a high quality of life with meaning, purpose and dignity. This change begins with us.

Dementia Friendly Communities has a target – to inspire 20,000 people to register to become a dementia friend by June 2019. Together we can help reach this target and help to shape dementia-friendly communities for tomorrow.

Visit dementiafriendly.org.au to sign up and complete the Dementia Friendly Communities online program. You’ll then receive your Dementia Friend kit.

NEWS IN BRIEF

Friends of Dementia Australia honoured on Australia Day People close to Dementia Australia were included in the Australia Day Honours this year.

Paul Robertson AO is a Dementia Australia Board member has been recognised for his distinguished service to the community through ethical leadership and management of, and philanthropic contributions to, health, social enterprise, research, education and arts organisations.

Emeritus Professor David Ames AO has been an invaluable supporter of Dementia Australia for more than 20 years. He has been honoured for his distinguished service to psychiatry, particularly in the area of dementia and the mental health of older persons, as an academic, author and practitioner, and as an adviser to professional bodies.

John Mildren OAM, a former Federal Member for Ballarat and former Chair of the Victorian Consumer Advisory Committee, has been honoured for advocacy for people living with dementia, their families and carers.

Dementia Australia extends its congratulations on these much deserved achievements.

Above John Mildren OAM with other consumer advocates at a Melbourne event in 2007, Margaret Baulch, Dementia Australia Honorary Member and Bryan Linacre

Autumn/Winter 2018 Memory Matters | 7

Sharing personal experiences through advocacy In 2011, John Hiller was diagnosed with younger onset dementia. John’s doctor referred him to Dementia Australia for support and care to assist him to live a fulfilling life after his diagnosis.

A lack of community awareness of dementia prompted John to become a dementia advocate. He wanted to tackle dementia head on; challenge what he saw as the existing stigma and myths that clouds the lives of people living with dementia, their carers and families.

John was also motivated to dispel the belief that dementia is a normal process of ageing and only affects the elderly.

“I was diagnosed at a relatively young age. Physically I haven’t changed, however people don’t understand the difficulties that I struggle with on a daily basis,” he said.

“People with dementia want to be accepted for their individuality, their value to family and community and not be defined by their condition.

“In order to achieve this, it’s important there is increased awareness and understanding of dementia so people living with dementia can be supported to live a high quality of life with meaning, purpose and value.

“We know there is currently no cure for dementia,

however people can learn risk reduction strategies, like participating in regular physical activities and eating healthy to help reduce their chances of getting dementia,” he added.

John is proud to be one of the founding members of the Dementia Australia Advisory Committee which was established in 2013. The committee consists of 12 people living with dementia who are involved in dementia advocacy.

Committee members provide advice on policy, advocacy and national programs. They also work to promote dialogue between those living with dementia and service providers, to promote a better understanding of how to support people impacted by dementia.

NEWS IN BRIEF

Above John Hiller, Member Dementia Austalia Advisory Committee

Above Neil Samuel, Dementia Australia Board Member looks on as Chef Jeffrey Tan OAM's book is officially launched in Parkville

Cooking for Charity Book Launched to support Dementia Australia A new book launched recently launched at Dementia Australia’s office in Parkville, Victoria, celebrates the life and work of Chef de Cuisine Jeffrey Tan OAM, while taking readers on a journey from Jeffrey’s childhood in Malaysia, to the founding of his multimillion-dollar charity initiative, with the added bonus of some delicious recipes.Dementia Australia Board Member Neil Samuel officially launched Cooking for Charity in the Perc Walkley Dementia Learning Centre, alongside Chef Jeffrey and book co-author, John Kumnick.Chef Jeffrey has been a passionate supporter of Dementia Australia and the Rotary International Foundation for many years, with the book launch providing a fantastic opportunity to celebrate his work. Chef Jeffrey inspired five chefs to join him and cook five courses during our A Night To Remember fundraising dinners over four years, raising over $200,000 to support our programs. All proceeds from the sale of the book go to Rotary International Foundation and Dementia Australia.The book can be purchased online at cookingforcharity.com.au

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Dementia Australia welcomes Ben Crocker as Ambassador Dementia Australia’s newest Ambassador has literally hit the ground running.

Soon after being announced as an Ambassador, Collingwood Football Club’s star half forward Ben Crocker had his first official engagement at the Melbourne Memory Walk & Jog in Templestowe on Sunday 22 April.

His personal connection to dementia comes through his father, Phil, who was diagnosed with younger onset dementia in late 2014 aged just 59. Phil’s diagnosis had a life changing impact on the whole family. When speaking about becoming an Ambassador for Dementia Australia, Ben said his family and the Collingwood Football Club are right behind him. With the support of the club, Phil has been able to stay at home and remain engaged with his family for longer, which has been important to the whole family.

When informing teammates about his Dad, Ben realised there was a lack of public knowledge about the second leading cause of death in Australia, particularly younger onset dementia, which contributed to his decision to join Dementia Australia in an advocacy role.

Ben joined a long list of Dementia Australia Ambassadors at the Melbourne Memory Walk & Jog including: Carlton AFLW star Nicola Stevens, Neighbours actor and Play School host Takaya Honda, Author and Broadcaster David Astle, Melbourne City W-League mid-fielder Amy Jackson, Gabrielle Williams MP as well as Ben’s Collingwood teammates and 280 game Collingwood legend and current Head Coach, Nathan Buckley.

Ben’s decision to help raise awareness about dementia in support of more than 425,000 Australians living with dementia and families in similar circumstances to the Crocker family had a positive impact on the Memory Walk & Jog at Templestowe, with the event attracting a record number of attendees.

Above A cherished family photo of Paul, Sam, Vicki and Ben Crocker

NEWS IN BRIEF

The week we went to print Ben presented Dementia Australia with a cheque for $5,000, a donation from Ben and all his team mates. He is pictured here with Leanne Emerson, Regional Director Dementia Australia. Thank you to Ben and the team for such generous support.

Australia’s best and brightest researchers funded The use of song writing to improve the relationships between people living with dementia and their families is just one of 17 new projects that will share more than $1 million in grants to conduct groundbreaking dementia research.Among the recipients is Dr Imogen Clark from the University of Melbourne who has been awarded a $50,000 Hazel Hawke Research Grant in Dementia Care and will use the funding to explore the potential of group songwriting as a means for improving social connection, mental health, wellbeing and quality of life for people with dementia and their family carers.The Chair of the Dementia Australia Research Foundation, Professor Graeme Samuel AC, said these grants directly support Australian researchers who are keen to understand the causes of dementia and develop strategies to reduce dementia risk, provide accurate and timely diagnoses, and improve treatment and care options for people who live with this disease.To see the full list of successful applicants, visit dementiaresearchfoundation.org.au

Dementia Australia is honoured Ben and his family are supporting our role as the national peak body for people of all ages, living with all forms of dementia, their families and carers, and we are very much looking forward to working with Ben in the future.

Autumn/Winter 2018 Memory Matters | 9

Call for people to Turn to Us for support and services While there is no cure for dementia, which is the second leading cause of death of Australians and the leading cause of death among Australian women1, the right support, information and help can make a life-changing difference to people living with the condition.

With more than 425,000 people living with dementia in Australia and an estimated 250 people developing dementia each day, Dementia Australia recently undertook a media campaign, calling for individuals, families and carers impacted to turn to Dementia Australia to access support that can empower them to live well.

“There is a perception in the community that nothing can be done following a diagnosis of dementia,” Dementia Australia CEO Maree McCabe said.

“However, with figures expected to soar to 536,000 people living with dementia by 2025 and more than 1.1 million people by 20562, it is vital people understand the right support can make the world of difference to everyone impacted by dementia.

“These figures are cause for concern and we do know we need to make sure we continue to invest in more research to try to find ways to better treat the condition or find a cure. But in the meantime, we must also make sure the huge number of Australians impacted by dementia are accessing good quality, appropriate support and services.

“Good support and services can help people cope better with the uncertainty and changes that come with dementia. One significant issue Dementia Australia staff often hear following a diagnosis of dementia is how isolating it can be, which can be devastating and debilitating.

“However, the right services can help people reconnect and re-establish relationships with partners, families and friends which can be so important for their emotional well-being. Social engagement and keeping physically and mentally active are also key in contributing to better health and lifestyle outcomes following a diagnosis of dementia.”

“Having a trusted, independent source of information people can turn to means that no matter what stage people are at, we can assist.

“We are encouraging people to turn to Dementia Australia for support, information, counselling and education. We can also put people in touch with other organisations and partners providing great services across the country.”

Dementia Australia – the new voice of Alzheimer’s Australia - has delivered services to more than 1.5 million people living with dementia, their families and carers from across the country over the past 10 years alone – and to many, many more since the organisation started more than 35 years ago.

Marina GermolusMarina’s son started noticing changes with her memory in 2012 and she was diagnosed with dementia in 2016. Marina said reaching out to Dementia Australia for support services has been crucial in enabling her to deal well with her diagnosis and get on with her life, including the ability to remain socially active.“They have given me social activity, respect and understanding,” Marina said. “They have allowed me to be who I am and they have assisted me in realising I am not alone − and those are the most important things.”

1 Australian Bureau of Statistics (2017) Causes of Death, Australia, 2016 (cat. No. 3303.0)

2 The National Centre for Social and Economic Modelling NATSEM (2016) Economic Cost of Dementia in Australia 2016-2056

Isabelle BurkeIsabelle was 20 when her mother was diagnosed with younger onset dementia at the age of 54. “Being so young when mum was diagnosed, I really knew very little about dementia and the impact it was going to have on our lives,” Isabelle said.“But through Dementia Australia we have been able to find out what information we needed at every step along the way, which has just made such a difference. “The support services have allowed me to cope with massive changes in my and my family’s life and to use what can be seen as a crushing diagnosis as a way of coming together to support each other as a family.”

Above Isabelle and her mother, Christine Burke who is living with younger onset dementia

NEWS IN BRIEF

Marina and Isabelle turned to us. As members of our Dementia Consumer Network they have shared their experiences to encourage others to seek support:

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SOCIAL ROUND UP

Guests at the May Dementia Australia Memory Lane Café at Mulgrave Country Club were delighted to be entertained by 60s pop legend, Normie Rowe. Mr Rowe generously performed at the event as a demonstration of his support for one of his oldest and closest friends, Bill, who is a regular Café attendee with his wife Jo, who is living with dementia.

In January, Maree McCabe, Dementia Australia CEO and Ita Buttrose AO OBE, Dementia Australia National Ambassador were guests of Priceline Pharmacy at the Kooyong Tennis Classic in Melbourne acknowledging the organisation’s generous support of Dementia Australia since 2012 through the Priceline Sisterhood Foundation.

Above and below, Cafe guests enjoying the day.

Autumn/Winter 2018 Memory Matters | 11

SOCIAL ROUND UP

In April in Templestowe and Geelong, thousands took on the course to raise funds and awareness about dementia at our Memory walk & Jog events. More than $1 million is raised nationally through these events each year powered by community fundraisers all over the country (bottom photo).

In February Dementia Australia’s technology, The Virtual Forest and EDIE (Educational Dementia Immersive Experience) were on show in the foyer of the Melbourne CBD office of the Victorian Department of Health and Human Services. Passers-by and DHHS staff (pictured left) were encouraged to try, first hand, to learn more about how Dementia Australia is using cutting edge technology to increase understanding about dementia for family and professional carers.

In May the Committee for Melbourne Future Focus Group hosted Creating a Dementia-Friendly Melbourne Breakfast Forum attended by representatives from Victoria Police, Royal Botanic Gardens, City of Melbourne, Arts Centre Melbourne, Swinburne, Monash and Melbourne Universities, and a number of major corporate groups. Prof Graeme Samuel AC, Dementia Australia Chair and Consumer Dementia Network members, Anne Tudor and Edie Mayhew (below) presented to the group to inspire them to develop Dementia Action Plans as part of Dementia Australia’s work towards building dementia-friendly communities.

Above Dr Diane Calleja, Dementia and Support for Carers, Department of Health and Human Services

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ABOUT US ROD AND LYNN McGREGOR

A fulltime carer for her husband Rod, Lynn McGregor shares the knowledge she’s gained about dementia with others to reduce stigma.Lynn knew little about dementia until her husband was diagnosed with younger onset dementia in 2015. Since then, she has been driven to learn as much as she can about the disease.“I am an advocate for dementia because of my husband. I knew a little about the condition before he was diagnosed, but not nearly enough,” she said. “Of course I would rather we didn’t travel this road, but the more I learn the better equipped we are to continue this journey together. I want to know as much as possible and help others to understand what it is like for someone living with dementia”.Lynn and Rod took part in Dementia Australia’s National Younger Onset Dementia Key Worker Program, which delivers individualised services and support for people living with younger onset dementia, their families and carers. The program provided Rod with weekly support groups that he could attend, whilst also offering important support and counselling for Lynn.

Contact: advocates@dementia.org.au or visit the Dementia Australia website at dementia.org.au

Lynn helps others understand dementia by sharing her knowledge with as many people as she can. “There is still so much stigma attached to dementia and many people just don’t know what to do or how to do it,” she said. “My husband often says that people treat him differently. I want to try and remove the stigma and make people realise that he is still the same person inside.The biggest challenge Lynn has faced personally is isolation and loneliness. “People say they are there for you but in reality, they are not. Family and friends have the very best intentions, but most of the time we are doing this alone,” she said. “We do have some occasional support from family and for that I am eternally grateful. More help, particularly financially, for carers would also go a long way to improving our lives”.

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Autumn/Winter 2018 Memory Matters | 13

RESEARCH FOCUS

Researchers to identify knowledge gaps in Tasmania to tailor dementia educationFrom plant nurseries direct to researchers – the funds raised from Plant Management Australia’s Dianthus ‘Memories’ flowers have now been placed in good hands.

Researcher Dr Claire Eccleston from the University of Tasmania Wicking Dementia Research and Education Centre has been making good use of the $50,000 Plants Management Australia - Whetman Pinks Project Grant awarded by the Dementia Australia Research Foundation in 2016.

With an aim of creating dementia-friendly communities, Dr Eccleston is focusing on determining the current attitudes and knowledge about dementia in communities so this information can be utilised to enable targeted, appropriate education to business, councils, schools, service clubs and service organisations within communities.

It is hoped that this knowledge will in turn support those organisations and individuals to better understand dementia, its impact, and how they can contribute to enhancing quality of life for people with dementia through individual and collective actions of an everyday nature.

Dr Eccleston anticipates to directly address the deficit of information about dementia knowledge in communities by using the Dementia Knowledge Assessment Survey (DKAS), a new tool developed by Wicking Dementia Research and Education Centre (WDREC).

The project has two main components: a quantitative survey followed by a series of focus groups targeting a wide range of people from different Tasmanian communities.

“In this way, we can find out what people do and don’t know about important issues related to dementia such as the causes and characteristics of the condition, how to care for and communicate with people living with dementia, and how to manage their own personal risk of getting dementia,” Dr Eccleston said.

“When developing dementia-friendly communities, dementia is everybody’s business. The consumers in this project are community members who will form part of dementia-friendly communities, and will be living with, caring for, and interacting with people with dementia.”

Dr Eccleston said that working as a carer for older adults and people with disabilities in her early twenties kindled an enduring passion to support people living with dementia to be able to live the best lives possible.

“I believe that there is still so much we can learn about the best ways to do this, and that quality research can answer many of our questions. In turn, research guides and forms an evidence base for education that is key to raising people’s awareness and understanding of dementia.

“Raised awareness and reduced stigma are, I believe, central to developing communities that are dementia friendly and to the adoption of quality, evidence-based care practices,” she said.

Dr Eccleston said that the grant provides vital funding that supports the project team in surveying and talking with people from communities across regional and rural Tasmania and parts of urban Tasmania that are less commonly reached.

“I was thrilled to discover that the funds supporting my research have come from purchases of the Dianthus ‘Memories’ flowers and to read the story behind the flowers’ development.

“Several of us plan to plant the flowers in our own gardens, and there is even talk of a Wicking pot of ‘Memories’ to be grown in one of our sunnier offices,” she said.

Plants Management Australia (PMA) Managing Director Chris Sargent said he is pleased that PMA’s continued commitment to the Dementia Australia Research Foundation through donating a percentage of the profits from the Dianthus ‘Memories’ plants has resulted in the funding of Claire’s research.

“Dr Eccleston’s research stood out to us as she is trying to make a difference in communities for everyday people. Her research focusing on making the lives of those affected by dementia, both directly and indirectly easier through education and understanding, can and hopefully will reach large and small communities across Australia,” he said.

“The fact that Dr Eccleston is based in Tasmania and as is PMA, provides an exciting opportunity to see firsthand what she discovers.

“Everyone is familiar with, and we are a fan of the saying ‘from little things big things grow’. In this instance from a little bit of education a big impact will be made for those affected by dementia.”

Dr Eccleston and her research team have collected more than 400 surveys completed by people from 30 different council regions of Tasmania. The researchers also spoke with six focus groups across the state from both rural and urban communities. Data analysis is currently underway.

Above Dr Claire Eccleston and Plants Management Australia Managing Director, Chris Sargent

Dianthus ‘Memories’, a perfumed plant with a pure white bloom was bred by Plants Management Australia to support dementia research, with $1 from the sale of each plant going to Alzheimer’s Australia Dementia Research Foundation.

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RESEARCH FOCUS

Minimally invasive blood test for Alzheimer’s disease announcedResearchers from Japan and Australia have teamed up to develop and validate a blood test for Alzheimer’s disease, which has the potential to massively ramp up the pace of drug trials.

The blood test measures a specific peptide in the blood to inform scientists, with 90 per cent accuracy, if a patient has the very earliest stages of Alzheimer’s disease.

One of the essential hallmarks of Alzheimer’s disease is build-up of abnormal peptide in the brain, known as beta-amyloid. The process starts silently about 30 years before outward signs of dementia, like memory loss or cognitive decline, begin to present.

Currently, levels of amyloid-beta in the brain can only be assessed reliably via brain imaging (PET scans) or by measuring amyloid-beta levels in the cerebrospinal fluid (lumbar puncture). For that reason, there is an urgent need for a more cost-effective and less-invasive diagnostic tool.

The research, a partnership between the Japanese National Center for Geriatrics and Gerontology (NCGG) and the Australian Imaging, Biomarker and Lifestyle Study of Aging (AIBL), involved measuring the levels of several amyloid-beta-associated biomarkers in the blood in cognitively normal individuals, people with mild cognitive impairment and those with Alzheimer’s disease, with a total of 373 participants.

Researchers found the ratios of the different amyloid-beta-associated biomarkers in the blood accurately predicted amyloid-beta deposition in an individual’s brain.

The blood test will help researchers recruit more people into clinical trials who are accurately identified as being ‘at-risk’ of Alzheimer’s disease. Clinical trials are expected to be most effective when patients are in the earliest stages of the disease, and the blood test may aid the selection of suitable clinical trial participants.

For consumers, it is a cost-effective and less-invasiv diagnostic tool. Eventually, people who have the test will be able to find out if they have an increased likelihood of developing Alzheimer’s disease, decades before obvious symptoms emerge. This would give people the opportunity to seek treatment sooner, and make some lifestyle changes, such as adjustment to sleep, exercise and diet, to potentially delay the onset of the disease.

DESeRvE program to assist in reducing stigmaA new program aimed at reducing stigma associated with dementia is being developed by the Australian National University researcher and recipient of the 2016 Alzheimer’s Australia Hazel Hawke Research Grant in Dementia Care, Dr Sarang Kim.

Above Dr Sarang Kim

Social stigma has a devastating impact on the lives of people with dementia and can often lead to social exclusion, discrimination, disempowerment and can even affect a person’s tendency to seek help or a diagnosis.

Results from a national survey conducted by Dr Kim and her research team show the general public hold negative views and express a desire for social avoidance of people living with dementia.

It is hoped the Dementia Stigma Reduction Program (DESeRvE) led by Dr Kim will enhance understanding and awareness of dementia and discover effective ways to reduce dementia-related stigma.

The program will use focus groups to gather information about what the general public would like to learn from people with dementia, and what people with dementia and their carers would like the general public to know about living with dementia.

“Education and having contact with people living with the condition are believed to be the most effective ways to reduce stigma and this is what I am going to use in my intervention program,” Dr Kim said.

“After the focus groups, we will create a series of short video clips featuring people with dementia and carers answering frequently asked questions drawn from the focus groups. These videos will be used for the general public to have virtual contact with people with dementia and carers.”

Dr Kim said she hopes her study sparks an interest in further studies in the area of dementia-related stigma.

“Despite stigma being identified as the number one concern for people living with dementia and their carers, research investigating dementia-related stigma is still lacking.

“Dementia is a neurodegenerative disease, however, due to its effects on memory, judgement and behaviour, it is perceived as a mental illness and is associated with the fear and misunderstanding commonly linked to other mental illnesses. Furthermore, dementia is often mistakenly assumed to be a natural part of ageing that only affects older adults.

“By increasing the public’s understanding and awareness of dementia and subsequently reducing stigma, it is envisaged that people will be more likely to visit GPs or other health professionals as soon as early symptoms of dementia are noticed,” she said.

Autumn/Winter 2018 Memory Matters | 15

POLICY UPDATE

Working closely with GovernmentThe year has been busy for the policy team, with a series of important consultations underway. The Government has been consulting with stakeholders and seeking their input on Specialist Dementia Care Units (SDCU), a budget commitment they made in 2016. The units are expected to support people who experience very severe behavioural and psychological symptoms of dementia, with the Government committed to establishing at least one SDCU in each of the 31 Primary Health Network regions. Dementia Australia has been advocating on behalf of people living with dementia and their families and carers throughout this process, with our key messaging focusing on a cautious approach to the planning and implementation of these units as well as a need to ensure ongoing education and training in behavioural and psychological symptoms of dementia in the sector more broadly.Significantly, we have recently had correspondence back from the Federal Minister for Aged Care, The Hon Ken Wyatt AM, MP, acknowledging our concerns, as well as assuring us of his commitment to protecting the rights of consumers and ensuring that the welfare of people living with dementia is the highest priority in the establishment of these units.We have also provided a submission to the inquiry into the Quality of Care in Residential Aged Care Facilities in Australia, being conducted by the Standing Committee on Health, Aged Care and Sport. This is the third inquiry into the residential aged care system, following a Ministerial Inquiry, as well as a Senate Community Affairs Committee Inquiry held last year. Dementia Australia has provided strong submissions drawn from consumer input to all these inquiries, and has also seen some positive results of our advocacy. The report from the independent ministerial Review heavily cites our submission and we were pleased to note that the Review has incorporated several of our suggestions in their final recommendations to Government.

Importantly, the Government has already moved to enforce unannounced accreditation visits across residential aged care, a recommendation that Dementia Australia and the Review had both made. The 2018-19 budget also includes many measures that Dementia Australia has called for the establishment of the new Aged Care Quality and Safety Commission. The commission will be supported by other significant measures such as the $50 million for a Quality Care Fund, $32.6 million to enhance the regulation of aged care provider quality, and $8.8 million to improve the transparency of information on aged care provider quality.We are also encouraged to note the progress being made around Elder Abuse made in 2017. The Australian Law Reform Council’s Elder Abuse report made a series of recommendations, many resonating with our own submission on the subject. The latest budget responds to key recommendations of the Australian Law Reform Commission’s Report into Elder Abuse and implements a national response on elder abuse and promoting older people’s safety. The funding will increase specialist front- line services to support older people and their families seeking help with elder abuse. It includes expansion and evaluation of elder abuse service trials, including specialist elder abuse units, family counselling and mediation services, and health-justice partnerships. The Government has also set aside funding to work with the States and Territories to establish a National Online Register for Enduring Powers of Attorney. This is very welcome funding in an area that Dementia Australia has been very active in. People living with dementia are uniquely vulnerable to abuse, and we hope to be able to work with the government to implement these measures.

The Policy team also participated in and facilitated a series of consumer roundtables with Leader of the Opposition, The Hon Bill Shorten MP in 2017. The roundtables, held in Sydney, Melbourne, Adelaide, Brisbane and Perth, culminated in a speech given by Mr Shorten at the Brain and Mind Centre in December where he highlighted his vision for improved dementia care in Australia. Mr Shorten shared his position and commitment to the growing health issue saying that “tackling dementia is our generation’s duty” and that it is “the defining health care and aged care challenge of the next 20 years”.

The policy team continues to work with all sides of government to ensure that the voices of people living with dementia, their families and carers are heard. Above The Hon Ken Wyatt AM, MP, Federal Minister for Aged

Care and Maree McCabe, Dementia Australia CEO, at the inaugural Parliamentary Friends of Ageing and Aged Care event at Parliament House Canberra in February

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DEMENTIA LEARNING

2018Dementia Learning GuideThe Dementia Learning Guide provides an overview of the range of learning opportunities available through Dementia Australia in 2018. This includes a suite of nationally consistent courses available through the Centre for Dementia Learning as well as a select range of programs that are only available in Victoria.

Dementia Australia has over thirty years’ experience in promoting high quality dementia practice. The Centre for Dementia Learning will provide a comprehensive suite of evidence based learning and consultancy services to help improve the quality of care and quality of life experienced by people living with dementia.

For further details on cost, venue, dates and times, please go to:dementia.org.au/CDL

For course bookings, contact us on03 9816 5708 or CDL@dementia.org.au

Download your FREEcopy at dementia.org.au/CDL

Out Now

Our award-winning education

Autumn/Winter 2018 Memory Matters | 17

LIBRARY OUR SEASON PICKS

Our library is at 100 Riversdale Road, Hawthorn and a smaller branch collection is also available at 155 Oak Street, Parkville Open Monday to Friday 9:00am - 5:00pm Call 03 9815 7800 or email vic.library@dementia.org.au

Somebody I Used to Know Wendy Mitchell, Anna Wharton (2018)When she was diagnosed with dementia at the age of fifty-eight, Wendy Mitchell was confronted with the most profound questions about life and identity. All at once, she had to say goodbye to the

woman she used to be. Her demanding career in the NHS, her ability to drive, cook and run - the various shades of her independence - were suddenly gone. Philosophical, profoundly moving, insightful and ultimately full of hope, Somebody I Used to Know is a memoir that gets to the very heart of what it means to be human. This Times bestseller is a rewarding read.

Yoga for dementia: a guide for people with dementia, their families and caregivers Tania Plahay (2018)

Proven to enhance wellbeing, posture, breathing and sleep, and reduce anxiety and agitation, this programme shows how

yoga can be adapted to benefit people with dementia. Based on the findings of a pilot therapeutic yoga programme for people with dementia in care homes, this book offers substantial yoga sequences, breathing exercises, meditations and mindfulness exercises for improving symptoms associated with dementia.

The room outside: designing outdoor living for older people and people with dementia Annie Pollock with Colm Cunningham (2018)Being outside adds to everyone's quality of life but too often this simple joy of living is

beyond the reach of older people and people living with dementia. It's time to rethink the buildings we use for providing care, and even our own homes, to ensure there is a readily accessible 'room outside'. The room outside is easy to read, informative and well-researched making it the perfect resource for those seeking to build, design or manage better outdoor

Dementia and human rights Suzanne Cahill (2018)

Uniquely, the book captures the insights and subjective experiences of both people living with dementia and their caregivers (formal and informal), as well as of policy makers and service planners. Distilling international case studies, research, and policy directives, this comprehensive, easy-to-read book makes an original argument for the joint improvement of quality of life and quality of care. More broadly, Cahill advocates for the need for social change, a greater awareness of human rights, and the incorporation of rights-based approaches into policy research and practice.

Alzheimer's disease and dementia: what everyone needs to know Steven R. Sabat (2018)Following on from his 2017 speaking tour in Australia for Dementia Awareness Month, Dr Sabat's has released a new book to support living with dementia. Dr Sabat’s research

has been around the intact cognitive and social abilities (including aspects of selfhood) of people with Alzheimer’s disease in the moderate to severe stages of the disease, the subjective experience of having the disease, and the ways in which communication may be enhanced.Uniquely, the book captures the insights and subjective experiences of both people living with dementia and their caregivers (formal and informal), as well as of policy makers and service planners. Distilling international case studies, research, and policy directives, this comprehensive book presents an argument for the joint improvement of quality of life and quality of care, and the incorporation of human rights-based approaches to care, policy and research.

Moving into residential care: a practical guide for older people and their families Colleen Doyle and Gail Roberts (2018)

Moving into care is a significant life event for older people and their families and often occurs at a time when other life

stresses such as deaths of loved ones and health complications are paramount. This book directly addresses the psychological impact that move can have, and offers tips for making the transition as smooth as possible. Based on material from interviews with a wide sample of people who had recently moved into care and a review of existing literature about the process, the guide follows the whole journey from considering a move into care, making the move and settling in, offering advice on each step of the way. This is an approachable and accessible read for those about to move into care and a helpful tool for families and staff who will be assisting them.

2018 has already seen many interesting, relevant and thought provoking new books published in the area of dementia. A small selection follows. Please feel welcome to get in touch with the library to discuss what else may be of interest. We look forward to hearing from you.

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FUNDRAISING IN THE COMMUNITY

Above Yarra Valley Ride to Remember cyclists hit the trail

Above Feature photo from Nick Locandro's My Cause fundraising page in memory of his father Sam

A Ride to Remember Yarra ValleyBryn, Kylie and Kirsty Jones will once again host the A Ride to Remember – Yarra Valley bike ride on Sunday November 2018. The siblings established the event in 2013 in honour of their mother, Anne who died from Lewy body disease the year before. Since then the event has grown to attracting 70 riders, child supporters and even some runners. Across the five years the event has raised more than $30,000 to support Dementia Australia.Thank you to everyone who has contributed and to all the inspirational Yarra Valley Ride to Remember cyclists.Anyone can support the participants by donating at https://ridetorememberyarravalley.com/ or register for themselves. The organisers can be contacted by phone. Kirsty on 0407 869 554 or Kylie on 0418 562 453.

A Ride to Remember Uluru to BallaratFor Nick Locandro the challenge of riding the 2,000km from Uluru to Ballarat in just 14 days to raise awareness for younger onset dementia, is in memory of his father Sam. Sam was in his early 50s when he was diagnosed with younger onset dementia.“All he ever lived for was making our lives as good as they could be - this is what made him the happiest,” Mr Locandro said.“Looking back I have realised many things. I learnt how isolating the disease was, not just for Dad but for our family as well. “Simple things like going to get a coffee with friends was so traumatising for Dad as he would not want to embarrass himself or others by spilling something or not being able to eat something properly. “Friends and family finding his illness confronting stopped dropping in to visit or including us in social events.”Mr Locandro aims to raise $20,000 for Dementia Australia when he sets off on his ride in September this year. Donations of support can be made through mycause.com.au/page/160265/a-ride-to-remember

Autumn/Winter 2018 Memory Matters | 19

Couldn't make it to a scheduled Memory Walk & Jog? Peter’s journey with Alzheimer’s began in 2011 when his late wife, Joyce, was diagnosed. Peter hosted his second DIY Memory Walk & Jog in March at Leura in the Blue Mountains in honour of his wife, raising an outstanding amount of money for Dementia Australia.

Climbing Mt Everest for dementiaFrom 21 October to 6 November 2018 our supporters will be combining a once-in-a-lifetime opportunity with raising funds and awareness for research and care for people living with dementia. The two week Dementia Australia 2018 Trek to Everest Base Camp will take in lush forests and stunning mountain scenery. The trek will not be technical, with a slow and easy routine, with only the elements, the mountains and the beautiful character of the people to accompany you. The trek will be supported by experienced guides from Alternative Adventure UK.With dementia being the second leading cause of death in Australia, your support is needed to help raise money for research and care of people living with dementia. You too can sign up for the Mt Everest trek and be part of this unique group. For more information visit dementia.org.au/everest-base-camp-2018. Or contact Arpi at arpi.achadjian@dementia.org.au or call 02 8875 4606.

Above Peter with family and friends at his second DIY Memory Walk & Jog in March at Leura in the Blue Mountains

FUNDRAISING IN THE COMMUNITY

REGISTER FREE AT vic.austhealthweek.com.au

20 & 21 August 2018Pullman Melbourne Albert Park, Melbourne

2 Day FREE-TO-ATTEND TheatreEmpowering Nurses and Clinicians to improve patient experience and outcomes in a resource constrained

environment

EARN 8 CPD POINTS

Why not host your own DIY Memory Walk & Jog or pledge your own kilometres by signing up to MY Memory Walk & Jog. Let’s get active and beat dementia together. Visit memorywalk.com.au or contact Ellie at ellie.saliba@dementia.org.au or 02 8875 4625.

Become a Dementia Friend today and learn how you can make a difference to the lives of people living with dementia, their families and carers. Through our services, education and information, we’re on our way to ensuring people living with dementia are understood and valued in our communities.

It only takes a few steps, visit dementiafriendly.org.au Here you will find information about the Dementia Friends program. By having a better understanding of dementia, you can be empowered to do small, everyday things that can make a difference to someone living with dementia.

It starts with you.

National Dementia Helpline 1800 100 500

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